Why Pelvic Pain Is Absent from YA Fiction

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Pain is, undoubtedly, hard to describe. Hot, cold, cramping, snapping, scaling 1-10. It’s all subjective and so damn hurtful that I’m sure most of us would like to never have to experience or describe it. But writers never like to sway from a literary challenge, do they? This begs the question: why is chronic pain, and in particular pelvic pain, absent from young adult fiction?

Pelvic pain is a misunderstood, misdiagnosed, poorly researched, and poorly treated spectrum of conditions. This applies to a lot of disabilities and illnesses, as many of us would know. Pelvic pain can affect all genders at many different ages. The cause can be a myriad of diagnoses, from endometriosis, to PCOS, pudendal neuralgia, vulvodynia, and even fibromyalgia. Symptoms include daily pelvic, menstrual, vaginal and muscular pain, cysts, tiredness, nausea, headaches, hot and cold flushes, dizziness. Pain upon touch, pain for no damn reason. Ill mental health is a big consequence of these constant, unrelenting symptoms. Medical treatments include a cheerless cocktail of painkillers, physical therapy, herbal supplements, contraceptive measures, and counselling. Not even a cute umbrella to go with the pink ice. For this twenty-two-year-old writer, the current diagnosis is the ever infuriating “nerve pain.” Looking at that diagnosis and then at my symptoms, it’s kind of like Fate has shoved me into the “too hard to figure out” box.

Angst like this would be perfect for young adult fiction. With 1 in 7 women estimated suffering from chronic pelvic pain (CPP), there is certainly enough readership and audience to warrant characters or storylines with a focus on chronic pelvic pain[1]. It’s bizarre and disappointing that despite these statistics, there are distinctly zero characters with this condition. That means, statistically, there must be some writers wanting to get a story with characters just like them out there, too. I know I do, and I’m trying! It must be noted that, of course, YA fiction doesn’t only encompass the type of angsty, Laurie Halse Anderson novels that I treasure. (Just making sure everyone understands my deep-seated love for Anderson. It is deep.) Novels featuring chronic pain can be in the fantasy, sci-fi, horror, and thriller genres as well.

Undoubtedly, there must be a number of reasons why chronic pelvic pain hasn’t been written about. As I’ve mentioned earlier, pain is hard to describe, and totally subjective. This could lead to authors unable to come up with new and interesting ways to explain how a character is feeling. A bigger stumbling block for authors seems to be that chronic pain often doesn’t serve a narrative purpose. It might seem too tricky or reductive to have a protagonist go off on an adventure while having to stop at every castle for a rest with a heat pack, or to be out of their minds on painkillers while slaying a dragon. But then, (physical) difficulties haven’t stopped all of these amazing books and characters from coming alive. So that excuse gets thrown out the ableist window.

For me, it mostly comes down to this sneaky, inherent little sexism that is attached to chronic pelvic pain. Although it can affect all genders, it mostly affects body parts such as pelvises, ovaries, fallopian tubes, and uteri, and thus predominantly affects females. This may contribute to the current blank space in YA lit.

Due to much of history kind of being like a boy’s club were girls were gross and had cooties, today it’s still unseemly to talk about periods, pelvic pain, and vaginas in polite company, let alone in fiction. People don’t want to read or hear about menstrual blood or think that maybe you have a reproductive system underneath your skin that is causing you so much trauma. From experience, I’ve learned just to say I have “chronic pain” when asked. People can be okay with, say, back pain. Their uncle or aunt has it. It involves something we all have: spines and muscles. But pelvic muscles? The things that are inside … someone’s … p-p-private parts? WE DO NOT SPEAK OF IT, M’LADY. And so a culture of silence has enveloped sufferers of chronic pelvic pain, and in literature we can’t find our voice.

Fertility is often a big issue for sufferers of chronic pelvic pain. For those who are young and want children (let’s take a moment to also acknowledge the kick-ass people that don’t, please), fertility issues can be depressing and life-changing. This might make budding authors believe the only way people with CPP can be written is if they are struggling with infertility. While this plotline is unlikely in YA despite its urgency in real life, it’s worth acknowledging that all stories involving CPP sufferers with infertility do not have to be wholly sad. People are more than their uteri and fallopian tubes: while those organs might rule their painful lives, they are not someone’s whole identity.

There are amazing reasons why characters with chronic pelvic pain should be written, by sufferers and those interested in this condition alike. It’s been proven that seeing positive representation with your identity in fiction or other media boosts self-esteem[2][3], especially for underrepresented groups. Writing a story about CPP would not only allow readers to connect with a character, but see you contribute to the important issues of chronic pain awareness and visibility.

Pain can add the angst or hurdle you’ve been looking for in your protagonist. Maybe along with finishing high school and dealing with divorced parents, she has to come to terms with her diagnosis of endo. What about having a teenage girl who, after a battle with her sworn shapeshifter enemy, is stabbed in the pelvis and lives with the pain and scars to remind her of her sacrifices to bring peace to her realm? THE STORIES WRITE THEMSELVES, PEOPLE. And don’t forget that it’s not only straight women who suffer from pain—a trap both the medical and spoonie community often fall into. Get those femmeslash fingers typing.

As evidenced by the popularity of the We Need Diverse Books movement and other diversity initiatives, there is a demand for writing about pain, illnesses and disabilities. We need more modern books written for people with disabilities by writers with disabilities. There are opportunities to connect with readers with disabilities and illnesses through places like Disability in Kidlit and spoonie Tumblrs. If you don’t suffer from CPP yourself, do your research and find networks to sell your story!

There are so many amazing reasons why visibility of pelvic pain in YA fiction is desperately needed. If you’ve got the doctor’s pad and a (pain)killer story, there’s an audience waiting for you to write out a prescription.

[1] 5 reasons for Pelvic and Vaginal Pain, Prevention online, accessed from http://www.prevention.com/health/health-concerns/5-reasons-vaginal-and-pelvic-pain

[2] Minority Women, Media and Body Image report, accessed from http://edis.ifas.ufl.edu/pdffiles/FY/FY113500.pdf

[3] Conversations about Body Image: A Place at the Table for Me? by s.e. smith, FWD/Forward, accessed from http://disabledfeminists.com/2010/09/11/conversations-about-body-image-a-place-at-the-table-for-me/



About Author

Emma Di Bernardo

Emma Di Bernardo is a graduate teacher from Queensland, Australia with a love of young adult literature. She has been a chronic pelvic pain spoonie for three years, and manages her illness with painkillers and a cynical sense of humour. Emma was the editor of the University of Queensland's Women's Collective's independent zine 'Wom*news' for three years. In addition, she recently participated in the One Woman Project, giving a seminar entitled 'Whitewashing Katniss Everdeen,' exploring race in the book to film adaptation of The Hunger Games trilogy. A passionate feminist and pop culture consumer, Emma hopes to further her study in special education while maintaining her love of writing.

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10 Comments

  1. Okay, I’m adding this one to my story clip file. Maybe it will make it into a future book. I’ve recently included protagonists with allergies, mysterious digestive disorders, and mitochondrial disease, so you never know! Pelvic pain and infertility are issues that I have dealt with personally, and while they may show up in the background in some of my work, they have not been major plot devices.

  2. I really appreciate this article. Every word speaks to me 😀 And I love so much that you mentioned femmeslash.

    As a long-time sufferer, I’ve wanted to see this represented in books. I’ve even thought of writing it myself, since it’s not there. However, I’ve never been sure how to make it something that’s not, well, boring. I can see it being an aspect of a character, but I guess I worry about dealing with pain and other issues coming across as whiny. Maybe I’m just too close to it right now, IDK.

    But hopefully your article will get some other people thinking!

    • Hi Leanne, thanks for leaving a comment – it’s lovely to read your response. I totally agree with you. It has taken me years to get to the point where I can create a character that is unlike myself and has similar, yet not identical, experiences with pelvic pain – and that’s only just been in the last year. So yes, I agree with the being too close to it all.
      Thanks for your lovely words, and I wish you all the spoons.
      – Emma

      • Thanks – you too!

        I thought more about it, and I also think I was reluctant because I doubted anyone would be interested. You mention pelvic pain in real life, and it’s like you grew a second head and no one wants to talk about it. Which reinforces why writing about this and representing it and everything else is so necessary.

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  4. I’ve been dealing with pelvic pain since my first period at age twelve, and I have NEVER seen pelvic pain dealt with in fiction. Any fiction. This needs to stop.

    • I’m sorry to hear you’ve been dealing with it for so long, Annie. It really does need to stop – we need some great characters! At the moment I am posting a short story series on my tumblr about a girl with pelvic pain, but it’s pretty slow going, posting when I can 🙂

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  6. Or even just dysmenorrhea. I barely hear any mention of periods in fiction, but when they are mentioned, they never seem to cause any problems for the woman. My periods leave me fainting from pain unless I take OTC pain meds early enough. In a fantasy setting with no easily acquired safe painkillers, it would be a serious problem – at the very least making me unable to function for 1-2 days a month, and possibly the impetus for an opium addiction.

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